Snow Foundation In The Media

Researchers launch first clinical trial for Wolfram syndrome

  Researchers at Washington University School of Medicine in St. Louis are launching a new clinical trial to assess the safety of a drug treatment for patients with the rare disease Wolfram syndrome. Wolfram syndrome affects about one in every 500,000 people worldwide. Many of those patients die prematurely from the disease. Patients with Wolfram […]

Rare Disease Day and Francis Collins Raise Awareness For The Snow Foundation

Last week, in honor of Rare Disease Day, the Snow Foundation was interviewed by the St. Louis ABC affiliate, KDNL ABC 30. The story focused on Stephanie Gebel and her fight for a cure for Wolfram syndrome and to revolutionize the diabetic world. Here is the story featured on the Jamie Allman Show.

WUSM “Outlook” Magazine

TAKING THE FIELD   Family teams up against childhood syndrome Washington University in St. Louis Magazine BY Diane Duke Williams Last year, Stephanie Snow Gebel found out that her youngest daughter, 5-year-old Raquel, has an extremely rare genetic disorder that may one day rob her of her sight, her hearing and many years of her […]

World Rare Disease Day 2014

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.  The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets […]

Wolfram Movie

“A Light in the Shadows” For the past few years, we have been filming a feature length documentary about Wolfram syndrome, and the brilliant team of doctors and scientists racing the clock for a cure.  Featured are the stories of four patient families, including Raquel Gebel and her family’s efforts to save her life and […]

Run for Raquel

Babler student benefits from Girls on the Run A fundraiser benefiting The Jack and J.T. Snow Scientific Research Foundation was held on Nov. 4 as a service project of the Babler Elementary School Girls on the Run team. Over 200 individuals participated in the 1-mile walk/run along the Wildwood Trails, which concluded with a health fair […]